I’ve Moved Beyond Guilt to Thrive on the Spectrum

When we first heard our son James Preston’s behaviors described as signs of autism, I remember having a visceral reaction, as if someone had just knocked the wind out of me. There was no way my son, now age 6, could have autism. I had just recently returned from maternity leave after the birth of our second son, Adam, and my professional career life was finally coming together. I was recently promoted and selected to manage a diversity and inclusion project that I was excited about. However, as many parents can relate, I was simultaneously sleep-deprived and still trying to learn how to balance my new dual roles of wife and working mother to a 7-month-old and then-2.5-year old.

Emotionally and psychologically, I felt like I couldn’t add the identity of “mom to children with autism” to my profile.

James was only two years old. I thought he was too young to receive any diagnosis to describe a handful of concerning behaviors. I could rationalize and explain all the behaviors of concern to teachers and medical professionals. So what if he didn’t understand how to properly play with toys, had difficulty stringing sentences together, had challenges transitioning and incorporating other kids in his play and had intense tantrums and meltdowns? He was only 2 years old — how could professionals expect a two-year-old to handle life experiences and transitions when there are adults that still need a lesson or two on social skills and how to properly communicate?

James Preston was born after three miscarriages. Once we were finally able to maintain our pregnancy, I vowed that this child would have every need met instantly. (Five years and two kids later, I see the error in my thinking.) As my son entered his “terrible twos,” I was not aware of the broadness in behaviors and signs of the autism spectrum. I figured since he was affectionate, playful and always maintained eye contact, he couldn’t have autism. Initially, I refused to even google the word “autism,” feeling like the further I could distance myself from the thought of it, the less likely he’d be to get the diagnosis.

My husband, Zack, had recently started a new job at a local university in our area as a development officer for fundraising, and in an odd twist of fate, he would play an active role in projects related to intellectual developmental disabilities and autism. He brought home pamphlets and articles describing the work of the institute and various initiatives they were planning on implementing. I tossed these papers inside Zack’s folders so they’d be out of sight, depriving myself of verified, legit information on the condition in our home. I quizzed Zack every day, using random behavioral observations of James Preston as an instance to rate the likelihood of his having Autism. His answer never wavered. He responded as any rational parent would: “Maybe it is, maybe it isn’t, but it wouldn’t hurt knowing for sure.”

From the very beginning, Zack was on board with having James Preston evaluated. He never pushed the topic and was very patient in allowing me to come to terms with our new reality. One night, after a day of numerous and intense tantrums during which James Preston screamed and hit himself, I pulled out one of Zack’s forsaken work papers and read about autism. I was finally willing to put my discomfort aside and do what was best for my child.

As I read about autism, I cried from the guilt and shame of not reacting sooner. This was the child I prayed and begged God for, the child whose needs were always top priority until now. That night, for the first time, I saw James Preston’s behaviors through the lens of autism. Everything made sense. I was shocked by the prevalence of the disorder, but more than anything I was fearful of all the unknowns for James Preston and our family.

This is when family, great girlfriends, a little bit of wine and lots of prayer helped me to finally begin to come to terms with my new reality. I still couldn’t bring myself to use the word “autistic.” James Preston’s initial diagnosis was Sensory Processing Disorder, which was easier to say, but still too abstract for me to fully understand. Over the course of the next six months, James Preston received occupational therapy and made tremendous progress.

I’d started to come to terms with the word Autism, but still secretly hoped he wouldn’t receive the diagnosis. I often reflected on his progress and tried to convince myself that maybe he didn’t have autism, all the while ignoring the impact early intervention can have on the disorder. But thankfully logic kicked in and I began to shift my perspective.

I thought, if James Preston was progressing so well and learning creative and imaginative ways to play and use his voice to communicate his needs, how much more could he really thrive developmentally if I truly met his needs and allowed for all his symptoms to be appropriately treated and diagnosed? After eight months of countless assessments, observations and too many parent assessments to keep track of, James Preston was diagnosed with autism.

I still remember hoping that the therapist and psychologist were going to say, “He’s just fine! He no longer shows signs of Autism.” Looking back, perhaps I almost thought it was something he could grow out of in a matter of months. Even after realizing that my son’s behaviors were not typical developmental growing pains, hearing the diagnosis of Autism Spectrum Disorder still hit me like a ton of bricks.

Right as I was coming to terms with one child receiving his autism diagnosis, my husband and I started noticing the regressive and restrictive behaviors of our youngest, Adam. To me, Adam’s symptoms were more “classic textbook” signs of autism. Once he turned 16 months old, he no longer responded to his name, stopped speaking and became dependent on the use of gestures to communicate his needs. He no longer made eye contact and began to demonstrate challenging behaviors like biting, scratching and hitting around his peers.

Now we felt guilty for pouring so much time and energy into one child and forgetting about the needs of our others. I remember thinking that there was no way God would do this again. I mean, really — who did I upset in the Universe? After another phase of deflecting and dissociating from the truth, I pulled myself together and went through the assessment process again.

Seven months after James Preston’s diagnosis, Adam received his diagnosis. I feared I didn’t have the strength to go through this a second time. The idea of parenting two kids with autism was overwhelming. I was eager to get Adam started with his therapies after seeing the impact early intervention had on James Preston. However, I quickly realized that every child truly is different. Even if two brothers have the same diagnosis, it manifests differently within each. What worked for James Preston did not necessarily have similar outcomes for Adam. I needed to respect this and find the joy and celebratory milestones that were meaningful to them individually.

No label or diagnosis could define the totality and pure joy and essence of my boys. I will never underestimate the challenges we face while parenting our kids with autism (which is far less in comparison to the challenges our boys experience), but during this period of acceptance and understanding, I needed to find the common bond between all parents to not get overwhelmed by my current situation and to not allow a single non-life-threatening diagnosis to totally consume how I understood my sons.

During this stage of our journey, I also realized the importance of self-care, and that in order for me to maintain my sanity, strength and optimism, I needed to prioritize myself. I re-engaged with girlfriends over dinner dates or short weekend trips, stopped rescheduling massages and facials and actually showed up for the appointments, and rediscovered hobbies I used to enjoy.

I also needed to tailor a support group that catered to my needs as both an evolving woman and mother. I needed to find people who understood my life and my children, and who shared a common language about the behaviors, symptoms and challenges of autism. I found my “A-Team” of mothers who still to this day provide a safe space to vent without judgment, validate my feelings and help me to navigate the complex and ever-evolving world of autism.

I wanted to understand the lifespan of autism and the diverse, individual ways it manifests. I also needed to see how fulfilling life was for the now adults who were once kids with autism, and learn what helped them thrive in their environments. I tailored my reading so I could nurture my spirit with stories of success, like the stories of a child with autism who didn’t speak until age 4 and was now graduating from law school or a child diagnosed with non-verbal autism who was presently graduating with her Master’s degree in speech pathology. I read books to better understand the disorder from the perspective of autistic individuals.

I learned so much from the other moms about strength and resilience. I saw how families were thriving on the spectrum. Sure, parents were making modifications for their kids, but still living and enjoying life and not allowing a diagnosis to define them or restrict their lifestyle. I noticed that more and more community events and public facilities were becoming inclusive of our kids’ needs and hosting sensory-friendly programming.

If society was beginning to notice and include my children, it was time for me to do my part. I relinquished the burden of secrecy and felt liberated by the act of informing individuals about my children and allowing for others to see what I saw: Amazingly affectionate, intelligent, hilarious, hungry little caterpillars that will soon develop into beautiful butterflies.